The doctors called today to discuss the direction we head in now. They want us to come for an infusion this week, again. Since we upped his other medications, they are going up on his IVIG dose as well. So we must return for the rest of our dose. They will also pulse him again with steroids. We will return to our regular scheduled infusions once a month in February. We go in tomorrow morning at 8:45. The doctors meet every week to discuss there cases. It was determined that given the inflammation that exsisted and his rash activity, no one is certain we have turned anything off so to speak. They don't know, I don't know, so we wait and watch. When the doctor called and asked how he was doing, I told him he was doing great. He is super boy after pulses. I did tell him you can tell it is starting to metabolize because his rash and skin just gets slowly redder and prominant. He starts having more fits. But then again its hard to tell with being 2 and steroids.
It is January. He turns 3 in March. I will almost not be able to say he is 2 anymore! I was looking at his bottom yesterday in his scooby doo's. It is amazing how little it is finally getting again. I remembered in the summer how his poor backside looked as if it may explode at any minute from all the steroids. He has gotten taller and the effects of the steroids are starting to fade away. That makes me happy.
I ran sixteen miles on Saturday again. It went ok. I was extremely nervous but its all worth it! I am excited and very very nervous all at the same time. What do I get myself into? : ) Can't wait. I am also trying to leave some baggae at home safely. Translation: I am safely trying to rid of as much body weight as my body will safely allow. I figure the lighter the load, the easier the run. My feet get pretty sore. I looked as if I am injured when I get out of bed first thing in the morning. But it just takes a little walking around to get the stiffness to work out. I ran 4 miles yesterday. It was probably the best run I have yet. It was warmer out so that really fuel'd me. I think we are taking the kids to Austin with us. It was really important to me that they get to experience this as well. Our whole family is effected by this disease so they have earned it. It is important for me to see that they you can do anything you set your mind to, well within reason as well. If I set my mind to be Shaq and play in the NBA, yeah it aint gonna happen. But if you have it (the almighty Lord blessed you with it), then put it to good use. So 2 legs, 2 feet, am I putting them to good use? LOL. It will be interesting as always figuring it all out financially. I worry about that part but it has always always worked out. Why start doubting now. I have not told the kids they are coming. I have said maybe, maybe not. I know they are going to be thrilled! A special thank you to Auntie for getting us there, we hope. Flight loads are already pretty full. Might have to get creative. Can you say road trip? I hope we don't have to go that route. But I am committed!
*Special thanks to the late Michael Jackson for pulling me thru the 11th mile on Saturday. I would have bailed if it weren't for his song BEAT IT.
I am very excited to get a new kitchen. I am not excited because I do not have one right now. The entire contents of my kitchen are in the rec room. I sit here now with all the cleaners and medications above me safely up high on the computer desk. We had an unfortunate flood underneathe the kitchen sink. It soaked the carpet all the way into the dining room. The damage the water caused was beyond us (underneath the cabinets, ect). They gutted the kitchen yesterday. It was interesting cooking dinner last night. It will be for the whole week. On the big up, I get a new kitchen?